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Dysautonomia

Maybe It's Not Autism

Maybe It's Not Autism

It’s been terrible the last couple of weeks… I feel worse than I did last December, terribly sad, lonely, hopeless. My suicidal ideations still occur, frequently. I feel drained, tired; at school this third semester I’m beginning to struggle with motivation and lack of creativity that I know once was there. The courseload is much greater than any of my past semesters—I think the trend line is clear at this point. I’m not sleeping enough, I’m missing assignments, and I feel like breaking into tears more than half the time. I began feeling better during the first months of the year when I started attending events, going places, and ‘meeting people.’ Despite those out-of-character efforts, I still failed to connect with anyone. As I began writing another post—still unpublished—I began writing about my social experiences.I really struggle with making friends, I don’t know what makes it so difficult. I feel overwhelmed with fear, it forces me to stare at the ground, make zero eye contact, and thoughts that people are out to get me flood my head. I finished my last year of high school without making a single friend; there were many days I didn’t even speak a word at school.After writing one more paragraph I decided to zoom out and read back what I’d just written. “Thoughts that people are out to get me flood my head;” In that moment my mind made the connection to schizophrenia; “That sounds like schizophrenia,” I went, internally. I don’t know where I learned that such paranoid thoughts and isolation were symptoms of schizophrenia, but I knew it. I also knew that a person with schizophrenia experiences intense psychosis, such as hearing voices, which began feeling somewhat similar to other personal experiences. I began to question why I get so intensely overwhelmed in social situations. Most of those paranoid thoughts I get occur when I’m in public without necessarily interacting with people. I feel that people are staring at me, judging my every move, and that’s when I get thoughts of them wanting to hurt me, or if I hear laughter I think they are making fun of me. It gets extremely uncomfortable and scary. Sometimes people do look at me, even though I’m not looking at them I can see their heads turn on the edge of my vision. Sometimes they are just looking in my direction, past me, and this also triggers it, but I almost never look up to confirm they are not looking at me. I first described this feeling in a past post from high school as I was debating if it was all in my head or not. Feeling that scared makes it hard to feel relaxed, I do not participate in class, I get overwhelmed at temple, I keep my head down, and miss familiar people that walk by. It is a terrible thing. Shortly after, I recalled writing about what I call a ‘delusional episode’ on the Dysautonomia symptoms page. Knowing now what a delusion is, the way I call such episodes is not really accurate. They are times when I feel numb, in trance, fatigue takes over me, and sometimes I hear voices, or have conversations with people as if it were a dream but being very much awake. That time on August 2nd I was laying in an awkward position on the couch with my head under some cushions for some 45 minutes. I began seeing the interior of a noisy shopping mall with lots of people; my perception began feeling overwhelmed by the noise and occasionally, a person, more like a black figure would appear in front of me and say something very scary which made me physically spasm. So recalling a time when I heard voices in my head and my usual paranoia made me realize that, at least with the paranoia; my daily experiences look like schizophrenia, and the auditory hallucinations, of course, very much relevant to schizophrenia. So, some learning was in order. Ideas of reference could be like I explained, when I hear laughter behind me, I immediately think it’s people making fun of me. Magical thinking; this one was interesting to learn about. So, I’ve always felt a special connection with the number 13, my favorite. As 133, it was the username Instagram assigned to me since my first choice was taken. When I glance up at the clock randomly it just so happens that it is 11:33, or 1:33, or 21:33. In the airport, Gates 1-33. My heart rate lingers at 133 bpm sometimes; I have a screenshot of an hour long workout with my current and average heart rate being 133. I began thinking of this weird but frequent occurrence as a manifestation of Hashem in my life; spotting the number makes me smile and say Toda Lecha up to the sky, but it was only recently that I discovered that the gematria of ‘echad’ is 13, and you know how the Shema goes. 1:33 am right now finishing writing this paragraph. I also talk, a lot, ‘alone.’ I don’t exactly talk to myself; I have a hallucination of a floating camera that follows me around all day and through it I broadcast to an audience of some 200 people that can interact with me. So when I talk to the camera I look at it, it commonly sits slightly to my side and points down at me, I do gestures at it, I tell the audience what is happening, engage in intense conversation, more like speech or monologue, about my day, how are things going, what I need to do, serious topics, etc. Sometimes I whisper at the camera when I cannot be loud, and when there’s people around I tell the audience I am going to transmit my voice directly to the camera, so they won’t see my mouth moving but they’ll hear me. I can switch the camera to my eyes, so the audience would see my pov. The stream layout has at the top a box reading out my every thought which I usually say aloud right away, or if the thought is too long or too complex I tell the audience “Thinkbox,” so they read the box. This feels different from being observed at all times, I find it relaxing and helpful for self-reflection and do not consider it a hindrance. Also relevant to schizophrenia is excessive daydreaming. I commonly get absorbed into my own thoughts which is a problem sometimes. Mom always says I’m in my own world, I fail to hear what people say to me, fail to understand instructions, and I get frequently caught during dissociation which makes me very self-conscious afterward. So, recognizing the symptoms, I looked up some questionnaires that did indicate the possibility of schizophrenia. However the questions on the tests sounded familiar to me; I realized some of them were part of my autism diagnosis. I looked up the file for the BASC-3 test I underwent and sure enough, the type of questions on the schizophrenia questionnaire were categorized as ‘atypicality’ on the BASC. The graph displaying the T-scores of each category showed my atypicality score as being the highest of all categories and it is halfway through the clinically significant range. If you look at the atypicality questions it is pretty clear that they are supposed to screen for schizophrenia spectrum symptoms.I feel like people are out to get me. I hear things others cannot hear, People think I’m strange. I see weird things. I hear voices in my head that no one else can hear. Even when alone, I feel like someone is watching me.So since my autism diagnosis I have recognized that I have those weird perceptions but didn’t know what they were related to. The result itself says that such a high score usually warrants follow-up, and that never happened. I am doubting my autism diagnosis, because even though some symptoms of schizophrenia can be similar to autism, I can’t see an autistic person getting that kind of unusual perceptions, hallucinations, and odd thinking. My next clinically significant results on the BASC were social anxiety, somatization, internalizing problems, hyperactivity, and interpersonal relations. I can immediately see how accurate those results are; social anxiety, no mystery there, somatization would be struggling with physical health symptoms, that I have described extensively on the Dysautonomia page. I guess I do internalize my problems, I hesitate to ask for help, until I realize I just can't cope. I decided to tell my doctor about all of this. I wrote a note because I knew I wouldn’t be able to get it all out without getting nervous. She read through my symptoms and the confessions I mentioned in the last post; she was very supportive and tried to understand some of my symptoms that weren’t too clear. She said I should talk to the social worker there but she was out for the day. She made sure I was not at risk of hurting myself and that I had support in the meantime. Revealing what pretty much all I’ve written here and in the Lies post was very scary, but I’m glad I did it, and now I’m going to get some help. The social worker contacted me and I am scheduled for next week. Same for counseling at school, I finally called to make an appointment, and after the intake appointment, they are probably going to provide a referral somewhere else. I had been looking forward to my appointment for more than a month. I began developing a dread sensation and had frequent thoughts that I would never make it to the appointment, that I would die before it, from lack of sleep, driving tired, not eating, due to my dedication to my assignments. I did have my appointment, but now I have to survive until next week Tuesday, and then until Thursday, and then until whatever date comes out of that Thursday meeting until I don’t have to survive anymore and instead will want to keep living again. I know deep down I do not want to die, even though at the moment my mind is partial about it. Additionally, school is becoming increasingly difficult. My third semester has just started and I'm already having to pull all-nighters to get work done. I feel that my motivation is gone, and my drawing skills are too; it is hard to come up with ideas, I spend hours just pondering on what to do for a project, and when sketching I have such a hard time getting it just right and get it done quickly. I've become terrified of what will become of me professionally when I once had such optimism and motivation that made me feel I could tackle anything. On the Industrial Design subreddit people frequently post about the lack of jobs in this field, even senior designers are struggling. People shift to other fields, newcomers get a big slap telling them to seriously reconsider getting into ID; the future seems very scary. And even if I ever get an interview, it is very likely employers are not going to want someone like me. I am beginning to think I should switch careers to something that would be stable. However, on some posts on the ID subreddit people say that if you like doing design, if you enjoy it, then it will be a great experience, hard nonetheless; you will definitely need to be willing to move to where the jobs are, and practice, practice, practice your skills. I certainly do enjoy it, I love building physical models in the shop and recreating objects in Solidworks; even though I'm having a hard time with it now, I know I would have a blast ideating concepts and later focusing excessively on details. But ID requires social skills, networking is essential, presentations, emails, and phone calls are a daily thing, and that's scary because I know I have big social issues. I'm hopeful I will make it; when I can get my sketches done they are amazing, teachers commend those skills frequently, and I've made a bit of fame for making clean sketches and models. However, I guess I do need to consider that if my mental condition doesn't improve, or develops into something worse, I should at least be working on having stable economic means. Let's see what happens...

Lies

Lies

I was 15 years old when I learned about HRT as I was discovering I might be trans. I immediately knew I had to get it as fast as possible, I could not stand seeing my body transform into a gender I know I am not every day that goes by, I thought, hormonal treatment would put an end to that, it would even correctly shape my body, as a woman. HRT is most certainly a privilege; some states and even entire countries have banned it, and some people cannot have it for health concerns, not to mention how expensive it is. Thankfully, I had amazing support from my mom who helped me find a doctor who could oversee the treatment and write an Rx, my mom would buy me a box of both Estradiol and Spironolactone every month, and when we moved to the US, she bought me a stockpile to have while we found a doctor here. As time went by, I became the person I should have always been, both inside and out, I really cannot express how grateful I am! Everything went just fine having found a doctor who could oversee my treatment, just one street away from home. But if you have read my previous posts, you may know I began having a hard time, mentally. The usual routine visit with my doctor goes as follows: I get some labs done at least two weeks before my meeting; it’s always interesting to see how my testosterone is just dead on the ground, not even there, lol. During my visit, she begins by asking which changes I’ve noticed in me since we last met, it’s always hard for me to tell, I don’t know why, I just know I love the overall changes. I mention just a small aspect and we move on. She then asked me about pill compliance, to which I respond no doses missed. Next comes mood changes, self-harm thoughts, I deny. Some more questions, enough water? standing up frequently? I nod. Lastly, a quick physical examination and that’s it, return in six months. I don’t think I have ever told her the complete truth. Drinking enough water as a trans woman is very important, the meds we take can be very hazardous to the kidneys. Those meds can mess with arteries and cause blood clots, and spider veins therefore it is important to not sit for long periods. I experience frequent fainting, usually when getting up or stretching, which has led my mom to believe I might be anorexic or maybe it’s the HRT meds that are affecting me negatively. I however think I might be lacking in some vitamins and a proper diet since I’ve had these episodes long before HRT, my earliest memory 13 years old, 2018. Anyway, I shared this with my doctor who hurried to grab the blood pressure meter cuff and told me to lie down for a while and then stand up slowly.I have no explanation for my frequent fainting, it’s just so weird. Almost every time I get up, immediately my sight goes dark, like tunnel vision starting from the edges to the center until everything is black, can’t see anything, this lasts max five seconds. At this point I begin feeling very weak and need to rest on something, I feel an annoying pulsating sound in my head, like my heartbeat. Another five seconds, after which my sight is back, any weakness is gone, I regain balance and can move on like nothing ever happened. This can also be triggered somewhat on purpose, by stretching, I can usually feel it coming and thus know when to stop, sometimes out of curiosity I’ve tried not to stop, I lose consciousness entirely, just drop dead to the ground, no hands. This happened once, in 2018 in front of my entire family one Sunday, I stretched, overdid it, and fell. People said my eyes were gone, I was gone. Out of nowhere, I get up, like nothing happened, not dizzy, nothing, just annoyed everyone around was hogging me, trying to help, really. By that time I had become accustomed to it, just wait ten seconds and get over it, but I had never fully passed out. I usually can hear and reply to people, that time I felt unable to speak or move. My mom got really scared. Some time later we went to the doctor to discuss this issue and all I can remember is an oxygen meter and her pressing my fingernails really hard, telling me they didn’t recover their color quickly and that I needed more vitamins.Doctor told me to drink enough water and to be careful when standing up, to do it slowly. When I returned home I checked our visit log, every single response ever is there, I located the vitals of the little test she did, and scrolling further down she wrote that my heartbeat increases when changing position but not my blood pressure, however, what was written after was a little scary. She wrote she might consider lowering my Spironolactone dose but my testosterone might increase. To avoid this from happening I was determined to improve my water intake habits; I got myself a water tracker app and tried my best. It didn’t work, I am terrible at staying on top of my water needs, I don’t know why, not even with the app I could do it. During our next visit, I just told her the fainting had gone away somewhat. Notes say: “ She has been drinking plenty of water. No dizziness, no lightheadedness.” I feel very, very stupid, but that is not the only time I’ve lied to her. August 2023 was when my suicidal thoughts came back, the beginning of a very draining time. I had my meeting with her on the last day of the month. I denied the suicidal ideations question. As I turned sadder I began forgetting doses, just the evening dose, both doses, both doses two days in a row; I kept denying having missed doses. I feel very ashamed, and I feel the need to come clean about everything. Yesterday I began feeling tingling in my hands and feet at around 8 pm, at first I thought my position on the couch caused them to go numb, but then I stood up and moved around, and the feeling remained, it’s now 9 am, still feel it. I couldn’t fall asleep; out of nowhere I remembered I could purposefully trigger the full fainting by stretching, somehow I thought it would help me fall asleep faster if I just passed out. I stretched, multiple times, but it didn’t happen; nothing weird, I don’t blackout a hundred percent of the time. Staring at the ceiling I began detailing in my mind the two types of fainting, when standing up and when overstretching. Halfway through I had the brilliant idea to type out that list to ChatGPT and have it tell me what those symptoms amount to; it is such a GPT prompt, I have no idea how I never thought of it before. Anyway, it’s AI, not a doctor, so my research wouldn’t stop there. I read some articles from the NIH and the AI seems to be accurate. Anyway, I finally know what my near-fainting might be, Dysautonomia; I'm so happy to know after all this time. I definitely want to tell my doctor that I keep experiencing the fainting. I went back to my visit notes from August 2023, my mind was so focused on the thought of my Spironolactone dose being lowered and my Testosterone levels increasing back then that I glossed past the beginning of the bullet point: orthostatic symptoms. I really need help, I know I can’t get past my psychological problems on my own, perhaps my doctor could refer me somewhere, but I can only imagine what would happen if I told her everything. Because of the fainting, she might lower my doses, but because of the suicidal thoughts she might take my meds away altogether, and she’d probably have to call my mom and get her involved. But I think that’s the best thing for me right now, she’d be a third party who would explain to my mum who refuses to recognize the state I’m in. And about the meds, I don’t even take them because I forget, so what I’d lose—I know that’s not really how it works. Whatever happens, it will be significant, but it will really help me out. For now I’m glad to finally have something to call these weird episodes. I hope everything will be fine. Update 15:00 I decided to grab the blood pressure monitor and run one of the tests I had been reading about. It consists of laying down for at least five minutes, take BP. Stand up as normal, take BP after one minute standing, and again five minutes after. I found that my blood pressure increased, a lot. Reading format: Laying down / delta / after standing up / after 5 minSYS: 106 / +48 / 154 / 124DIA: 62 / +25 / 87 / 85BPM: 70 / +47 / 117 / 105POTS diagnosis +40 bpm (until 19, onset 14) / I got +47 My heart rate increased by 47 beats per minute after standing up, more than what's required for a POTS diagnosis. I've always thought my near-fainting was just a little more extreme case of what everyone experiences, nearly everyone can feel dizzy after standing up sometimes. Looking at the numbers, I mean, I realize how serious this is, and I just write it off as a little 15-second annoying moment. From lying down to slowly sitting on the edge of my bed to standing up my bpm went into a little tachycardia from 70 to 117! When I walk with my mom in the park my Apple Watch reports my bpm to be +30 that of hers, and we are walking at the same pace. I don't know, there's something significant going on, and I promise to tell my doctor about it, perhaps show her this post. Update Monday 5, 4:10 I have been reading about common symptoms of POTS such as intense fatigue, a lingering pain all over, nausea, and of course the near fainting, and loss of vision. And I experience all of this, and I never thought those symptoms could be related to my near fainting, I mean, even the fucking massive hiccups I get for like half an hour sometimes are related to dysautonomia, my hands getting red at times, and my need to lay down and not do anything from intense pain and tiredness, what my mom loves calling ’ laziness’ once every bloody hour. I don’t know how I could feel so much general pain and think is normal; it’s like being sore all over, limbs feel heavy, lots of tingling, and pretty much ignored it. My experience showering and washing dishes I detailed in my autism post, both activities are done standing, and I hate them, I always sit down to do things when I can. When my mom spots me sitting she goes “why are you sitting? You don’t do that sitting, you’re so lazy,” when ironing or putting clean laundry away, I guess my body recognizes how draining it is yet my brain doesn’t get the memo. Anyway, both activities leave me drained for a long while and all I want to do is lay down. So a couple of hours ago I had a little moment of optimism, just like I had when I began seeing my autism as my complement, traits that make me who I am; dedicated, curious, clever. I thought of dysautonomia as the key to my massive self-esteem and optimism. If you think of it, my sole existence is a challenge, painful sometimes, yet I prevail, because I push through things. Getting to my classroom involves lots of walking in the sun from my car, and so many times I’ve arrived nearly passing out, and when I enter the classroom, all sweaty, people start coming up to me to see my homework sketches; I happen to have made some fame from my sketching. But I wouldn’t be there with my amazing sketches if the night before I hadn’t pushed through my pain to get up and work. And this philosophy extends elsewhere, my drive to always deliver, most times more than I’m asked for. Like my trash can last winter; teacher wanted us to make a trash can model out of cardboard, he provided sketches, a 3D model and instructions on how to make the mechanism to make it functional, but allowed freedom to change the mechanism. I despised the way the design looked with such mechanism, I wanted a cleaner, modern look, it was a challenge, lots of planning, doing, redoing, but I did it, I didn’t give up, I committed and pushed through the challenges, which also included driving to school and back, walking to my car. It makes me so proud and reassured that despite my challenges I can still do it, I can get through this chronic pain even while setting myself an extra challenge; I feel I could do anything. So, ‘lazy,’ fuck that, I literally work out just by standing up.